Sara J. Klaas

Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries

OBJECTIVE To determine long-term outcomes and life satisfaction of adults who sustained pediatric spinal cord injury (SCI). DESIGN Structured interview of adults who were 25 years or older who had pediatric SCI. SETTING Community. PARTICIPANTS A convenience sample of 46 patients from a total of 81 patients who received care in an SCI program: 1 refused participation, 4 died, and 30 were lost to follow-up. MAIN OUTCOME MEASURES A structured questionnaire including physical, psychosocial, and medical information. The Craig Handicap Assessment and Reporting Technique and two measures of life satisfaction were also administered. RESULTS Participants were 25 to 34 years old, mean 27 years. Thirty-two had tetraplegia and 14 had paraplegia. Thirty-one were men. Mean years of education was 14. Fifty-four percent were employed, 48% lived independently, and 15% were married. Life satisfaction was associated with education, income, satisfaction with employment, and social/recreation opportunities, and was inversely associated with some medical complications. Life satisfaction was not significantly associated with level of injury, age at injury, or duration of injury. CONCLUSIONS Individuals who had pediatric SCI, much like adult-onset SCI, have the greatest opportunity for a satisfying adult life if rehabilitation emphasizes psychosocial factors such as education, employment, and long-term health management.

Assessing patterns of participation and enjoyment in children with spinal cord injury

Aim  To determine patterns of participation and levels of enjoyment in young people with spinal cord injuries (SCI) and to assess how informal and formal participation varies across child, injury‐related, household, and community variables.

Anxiety and depression in children and adolescents with spinal cord injuries

Aim  To determine the levels of anxiety and depression in young people with spinal cord injuries (SCI) and their associated factors and outcomes.

Unique issues in pediatric spinal cord injury.

Spinal cord injuries are devastating events, and they are particularly tragic when they affect children or adolescents who have barely had an opportunity to experience life. Of the approximately 10,000 individuals who sustain spinal cord injury each year in the United States, 3% to 5% occur in individuals younger than 15 years of age and approximately 20% occur in those younger than 20 years of age (Nobunaga, Go, & Karunas, 1999). Because of the growth and development inherent in children and adolescents and the unique manifestations and complications associated with spinal cord injuries, management must be developmentally based and directed to the individual’s special needs (Vogel, 1997). The many unique facets of pediatric spinal cord injuries are addressed in this article. They clearly delineate the need for care that is responsive to the dynamic changes that occur with growth and development. The multidisciplinary team, combined with a focus on family-centered care, is essential in pediatric spinal cord injuries.

The Changing Nature of Play: Implications for Pediatric Spinal Cord Injury

Abstract Background: Perhaps no other demographic group in the history of the United States has undergone such a significant transformation in the past several decades as that of our children. Societal trends have dramatically altered the nature of play and the way children interact with their environment. These trends have included a significant decrease in outdoor recreation, an increased dependence on electronic media, and the conceptual emergence of “time poverty.” Consequently, childhood obesity and type 2 diabetes rates are skyrocketing because of the preponderance of sedentary lifestyles, and children are experiencing poor social skill development, less problem-solving abilities, and a marked increase in depression. For children with disabilities, such as spinal cord injuries (SCis), these issues are even more significant. With a traumatic injury, the need for play and its therapeutic value becomes more important and yet is harder to attain. Methods: Literature review. Findings: In a study examining recreation involvement for 66 children and adolescents with SCI, the top 5 activities were all sedentary in nature, involving little to no social interaction and conducted indoors. Listening to music, reading, computer, video games, and television viewing are the top recreation activities for children and adolescents with SCI. In addition, data collected in 2005 on “participation in organized community activities” for the pediatric SCI population found 203 of 326 patients reported no participation in sports, clubs, or youth centers after injury/diagnosis. An astonishing 62% reported no organized activity at a time when participation in adult–supervised structured activities for able–bodied children is at an all–time high. Given these statistics, it is imperative that pediatric health care professionals understand societal trends and how they affect the SCI population. Making meaningful connections between these trends and the impact they have on children and adolescents with SCI will provide the theoretical framework for future solutions.

Girls with spinal cord injury: Social and job-related participation and psychosocial outcomes

OBJECTIVE To examine social and job-related participation among girls with spinal cord injury (SCI) and relationships between participation, depression, and quality of life. PARTICIPANTS AND SETTING This sample included 97 girls (aged 7-17 years) who had sustained SCI at least 1 year prior to interview, and who were receiving care at three pediatric SCI centers within a single hospital system. MEASURES Participants completed the Childrens Assessment of Participation and Enjoyment, Childrens Depression Inventory, and Pediatric Quality of Life Inventory. Caregivers completed a demographics form. RESULTS Girls participated more often in social activities than in job-related activities and participated in social activities with a more diverse group and further from home. A broader context of social participation was related to lower depression, which in turn was related to higher quality of life. Higher frequency of job-related participation was related to lower depression, which in turn was related to higher quality of life. CONCLUSIONS Social and job-related participation are related to psychosocial outcomes among girls with SCI. Participation in social and job-related activities should be a focus of rehabilitation for girls, because the skills gained from this involvement may help build resilience against future obstacles to socialization and employment.

Leisure characteristics of the pediatric spinal cord injury population.

Abstract Objective: Despite the fact that play is the foundation for growth and development, little empirical evidence exists about the Ieisure characteristics of the pediatric spinal cord injury (SCI) population. The purpose of this study is to establish such a basis through the examination of Ieisure interests, frequency of participation, and satisfaction with activity in children and adolescents with SCI. Methods: A Questionnaire with open-and closed-ended questions for 49 recreation activities was administered to a convenience sample of children and adolescents with SCI from Shriners Hospitals for Children, Chicago. Results: Data from 66 children and adolescents with SCI demonstrated that the higher the intensity Ievei of activity, the lower the participation rate among all injury Ieveis. Subjects with C7-T6 lesions spent the mosttime engaged in recreational activities and also had the highest number of activities participated in per year. However, those with T7-54 lesions had significantly more hours spent in high-intensity activities. Conclusion: The goal is for rehabilitation professionals to use this information to further develop treatments and interventions specific for the pediatric SCI population.

Psychosocial Outcomes Among Youth with Spinal Cord Injury and Their Primary Caregivers

BACKGROUND Past research has found youth with disabilities to experience poor psychosocial outcomes, but little is known about factors related to psychosocial health among youth with spinal cord injury (SCI). OBJECTIVE To describe psychosocial health among youth with SCI, examine relationships between psychosocial outcomes and demographic and injury-related factors, and examine relationships between aspects of psychosocial health. Youth activity, participation, quality of life (QOL), coping, anxiety and depression, and caregiver mental health were included. METHODS Data were collected as part of a prospective study of 420 youth with SCI ages 1-18 and their primary caregivers. Activity data were also presented from a study developing a computerized adaptive testing (CAT) platform with 226 youth with SCI ages 8-21. RESULTS Although relationships varied by factor, youth outcomes were related to youth age, sex, age at injury/injury duration, and level/extent of injury. Caregiver mental health related to child age and age at injury. Further, relationships were uncovered between aspects of psychosocial health: aspects of youth mental health were related to youth participation and QOL, youth coping was related to youth mental health, participation, and QOL, and caregiver mental health was related to child mental health and QOL. CONCLUSION Psychosocial outcomes relate to each other and vary by child and injury-related factors and should be understood in a comprehensive, developmental context. Identifying best measures of activity and psychosocial functioning among youth with SCI and understanding factors related to their psychosocial health is critical to improving outcomes for the pediatric-onset SCI population.

Coping and Participation in Youth With Spinal Cord Injury

BACKGROUND Coping and participation are important adjustment outcomes of youth with spinal cord injury (SCI). Research addressing how these outcomes are related is limited. OBJECTIVE This cross-sectional study examined relationships between coping and participation in youth with SCI. METHOD Youth ages 7 to 18 years were recruited from 3 hospitals specializing in rehabilitation of youth with SCI. The Kidcope assessed coping strategies, and the Childrens Assessment of Participation and Enjoyment (CAPE) examined participation patterns. Point biserial and Pearson correlations assessed relationships among variables, and hierarchical multiple regression analyses examined whether coping significantly contributed to participation above and beyond significant demographic and injury-related factors. RESULTS The sample included 294 participants: 45% female, 65% Caucasian, 67% with paraplegia. Mean age was 13.71 years (SD = 3.46), and mean duration of injury was 5.39 years (SD = 4.49). Results indicated that higher levels of social support and lower levels of self-criticism predicted higher participation in informal activities, lower levels of social withdrawal predicted participation in informal activities with a greater diversity of individuals, lower levels of blaming others predicted higher enjoyment of informal activities, and higher levels of cognitive restructuring predicted participation in formal activities with a greater diversity of individuals and in settings further from home. CONCLUSION Results suggest higher levels of social support and cognitive restructuring and lower levels of self-criticism, social withdrawal, and blaming others predicted favorable participation outcomes. Interventions for youth with SCI that encourage higher levels of positive coping strategies and lower levels of negative and avoidant strategies may promote positive participation outcomes.

Evidence-based practice in primary prevention of spinal cord injury

A spinal cord injury (SCI) not only causes paralysis, but also has long-term impact on physical and mental health. There are between 236,000 to 327,000 individuals living with the consequences of SCI in the United States, and the economic burden on the individuals sustaining the injury, their support network, and society as a whole is significant. The consequences of SCI require that health care professionals begin thinking about primary prevention. Efforts are often focused on care and cure, but evidence-based prevention should have a greater role. Primary prevention efforts can offer significant cost benefits, and efforts to change behavior and improve safety can and should be emphasized. Primary prevention can be applied to various etiologies of injury, including motor vehicle crashes, sports injuries, and firearm misuse, with a clear goal of eliminating unnecessary injury and its life-changing impact.